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This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.
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Interpretation of Celiac Disease Blood Test Results
Can I be tested even though I am eating gluten free?
How long must gluten be taken for the serological tests to be meaningful?
The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free
Is celiac inherited? Should my children be tested?
Ten Facts About Celiac Disease Genetic Testing
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Celiac Disease Research: Associated Diseases and Disorders
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Unsafe Gluten-Free Food List (Unsafe Ingredients)
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Safe Gluten-Free Food List (Safe Ingredients)
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Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?
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So I have been 100% Gluten Free ever since July and have been trying to be 2 weeks before that with little gluten occurrence and I literally was getting an increase in my energy level. yet not I am beyond extremely exhausted like if I am actually dying.

At this point my energy is to its lowest it has ever been in my life, even walking has because difficult,requiring so much energy. Originally I was having a lot of cramps and intestinal pain along with bad constipation and after going Gluten-Free, most of my symptoms had been decreasing.

But now my energy is beyond low, I feel constant need to sleep, my attention can be there, I have less brain fogs then I used to have but any physical effort is just awfully difficult.

I been working out for 2 years and more now, believe me when I say I look healthy. My weight if between 145 and 150lbs and I am 5'10 male, yet my health has been worse then it ever has been and to be fair I don't see how its ever going to get better.

I don't see what I am doing wrong, I try to get my 9 hours of sleep and the last 2 days I slept about 5-6 and last night 6-7, it gets very difficult to fall asleep due to many external factors like my arms being extremely numb, nose's noise and simply not falling asleep because of high stress. Which btw, stress has also been the highest it has EVER been in my life.

From low energy to having to find a job because i was only working 2 days a week and since those last 2 days, I been working a new job that will be full time but I don't see how I'll be able to pull this through from feeling so energy deprived.

It doesn't help that I've been getting 2 pilonal cysts and what feels like but acne that doesn't go away, yup butt acne which should only get better but it seems to get worse. I also apply castor oil and apple cider vinegar to help all that go away.

I have been completely Gluten-Free (1 Month), more recently Dairy Free (2 weeks), I been combining a gluten-free diet and not absolute but severely based Blood type diet, to give myself the best chance of healing, yet it doesn't feel like I am healing at all but simply dying slowly.

My daily meals consider of the following.

Wake up-Spaghetti sauce: Beef,Tomato,tomato sauce,Mixed colored Peppers,Garlic, spices. (All nutritions that are Pro Blood Type diet, which btw I am O, not sure if + or - but both parents were +.

1H Later:Coffee with Coconut oil and milk, and organic honey.

2H Later-(Corn, Amaranth,flaxseed, buckwheat) cereal, Coconut milk, frozen berries(blueberries,strawberries,black cherry and mango) with cinnamon and almonds that make sure not to mentioned any presence of wheat.

I see lots of grainy carbs. Personally, I'd scale back on the grainy stuff and add more veggies. But I respond to veggies positively and grains negatively. A good chunk of gluten intolerants do...something to consider.

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It doesn't matter how healthy you eat. If you're celiac, your body isn't absorbing the nutrients you need, or at least enough of them.

Before finding out about celiac, I woke up every morning feeling like I was a zombie who got hit by a bus the previous night, so I decided to eliminate any junk food and processed snacks from my diet in order to have more energy. Instead of feeling better, I felt worse, and worse.

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I felt worse before I felt better. When I was diagnosed with celiac my husband and I were both quite sure at that point that whatever was wrong with me was probably killing me but damned if we could figure out what it was. At that point, I felt pretty much like Dani, a zombie who got hit by a bus. And those were my good days. Then I got my diagnosis and went gluten free. And then I felt worse. So. Much. Worse. It was like I was a zombie who was sucked dry by an army of vampires and left in the middle of the freeway to be hit by 100 buses. Eventually it passed.

The withdrawal can be terrible and for the first time your body isn't fighting itself over this poison you are putting in it. Just like when you get sick with the flu or after a major surgery, as your body begins to heal it sucks the energy from you and you feel drained. You'll get through to the other side, you simply have to have patience. This is a marathon, not a sprint. You could have vitamin deficiencies, you could have intolerances to other foods, you could be crashing from too many refined carbs, it could be a million things on top of the fact that your body finally has a respite from being poisoned.

My best advice though is to treat your body well, give it as much as you can in fresh veggies, fruits and meats and give it time. Make sure you are at least getting enough time in your schedule for enough sleep, and carve out enough for some naps as you need them on days off if you tolerate naps well without disrupting your life too much. A lot of people think this is some sort of magic cure-all and they stop eating gluten and in a week they feel like superman. It doesn't work that way. (which sucks) Healing may take the patience of a saint, and you may have to dig deep to find that patience. (I sure as hell have had to! )

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I had those death like feelings during withdrawal. Realize it is temporary and try to go on. Resting time is good. One needs it during this time. Eventually I would have some really low lows (dying?) followed by the highest high I remembered in years. When I finally started to get better, I felt I should be better every day, but there were twists and turns and bumps. I felt hopeless every time I bottomed out. You may be at a bottom point, but it may get better soon.

After 30+ years of celiac symptoms, I didn't die. Instead I am now living with a clear mind and energy. Keep on walking...

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I've been gluten free since Feb. and have had similar experiences. They say it's withdraw but I am also Deficient in iron and other vitamins. When the iron levels started improving I started getting more energy. I'll be doing great and then it hits me again. Sadly, it's a process. Hang in there and listen to your body. Also, have they checked your adrenals?

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I still don't see enough greens and other veggies in your diet. The addition of chicken and eggs are good (so long as your body can tolerate the eggs!)

Maybe...along with your spaghetti in the morning you could have a smoothie with fruits and greens in it. Salad fixings aren't insanely expensive and one package of organic spinach would last you for a week if you're only using it in smoothies...though you could mix it up in your spaghetti sauce too.

We've only been working on being gluten free for a week. It's been a tough week full of outings and graduation parties so it's been rough but we've done it. Hardest, I think on the 6 year old who HAS to be gluten free.

But I have turned to more fruits and veggies to round out meals than I ever have before. I haven't (unfortunately) been able to get the vitamins to supplement with because they're so expensive and I simply don't have the money right now. We've only eaten noodles once which is almost unheard of in my house. There are 5 of us....6 if you include the dog....so noodles and bread were always some staples for filling growing tummies (my 15 year old is a bottomless pit!) amazingly, he likes the gluten free stuff!

Grapes are always present and right now I have cherries. We will have melons....cantaloup, watermelon and honey dew melon. Watermelon tastes wonderful frozen. Lots of salads full of greens and carrots and peas and green onions....occasionally cut up chicken or my husband will put tuna in his. We've been pretty big on asparagus lately too....and if you wrap it in bacon...it's like a treat! We can even convince the 15 year old anti-veggie picky eater to eat some that way. Only one piece....but it's progress! Now he just eats it instead of choking it down like it's killing him!

I can't say I understand the eating to your blood type diet....but I've never really understood any diets unless it was for a medical reason like diabetes or celiac....I should say a proven medical reason like diabetes or celiac. Your diet just seems incredibly restrictive and not in a good elimination diet kind of way. I know I wouldn't feel good eating only those foods every single day. And from what I've read, eating the same stuff day in and day out can bring about some extra food intolerances too...but sometimes you do what you have to do. If those are the only things your body can tolerate right now...that's what you need to be eating....I just hope you aren't being needlessly restrictive due to the blood type diet you're also attempting to follow.

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Don't worry about the blood type nonsense. There is no scientific proof for it. In fact, we had a thread a while back and noted that we had some of every blood type not tolerating gluten.

Celiacs have a hard time absorbing nutrition until they heal. You might want to take some vitamins & maybe a sublingual B12. Some will be absorbed by the I damaged parts. You might want to get your thyroid checked in a few months if you are still unusually tired.

I don't see what I am doing wrong, I try to get my 9 hours of sleep and the last 2 days I slept about 5-6 and last night 6-7, it gets very difficult to fall asleep due to many external factors like my arms being extremely numb, nose's noise and simply not falling asleep because of high stress. Which btw, stress has also been the highest it has EVER been in my life.

From low energy to having to find a job because i was only working 2 days a week and since those last 2 days, I been working a new job that will be full time but I don't see how I'll be able to pull this through from feeling so energy deprived.

...

My daily meals consider of the following.

Wake up-Spaghetti sauce: Beef,Tomato,tomato sauce,Mixed colored Peppers,Garlic, spices. (All nutritions that are Pro Blood Type diet, which btw I am O, not sure if + or - but both parents were +.

1H Later:Coffee with Coconut oil and milk, and organic honey.

2H Later-(Corn, Amaranth,flaxseed, buckwheat) cereal, Coconut milk, frozen berries(blueberries,strawberries,black cherry and mango) with cinnamon and almonds that make sure not to mentioned any presence of wheat.

So that's it, I don't get how I feel so tired, I eat my proteins my fruits and avoid the bad stuff, yet here I am, like I am going to die.

So hopefully anyone can help me figure this out, thanks.

Why do you have numb arms? What's wrong with your sinuses? What are you doing about the stress?

While I'm NOT going to say "it's all in your head", chronic stress can cause very, very real physical, biologically based symptoms. But all the diet changes and exercise in the world won't help much if you don't address the cause of the stress and your own personal resources for handling it. Meditation, therapy, cognitive modification... there are lots of ways to work on changing your perspective on stress that can physically reduce your stress. (Various types of meditation, for instance, have been shown to lower blood pressure and cortisol (a stress hormone) levels, as well as change cognitive patterns.) Removing partiuclalry stressful triggers is also important, and sometimes dismissed as being "impossible". (For me, it was my job as an engineer and not keeping it cut our take home pay in half, but it was absolutely worth it.)

You may also have real, physical complications - like the nerve issues that are causing numb arms. (It points to something going on with the lower vertebrae of your neck.)

I also see a fairly high carb diet here. Not super high, but might be an issue. I also see far less than 5 servings of fruit and vegetables (think 3 and 3, really), and I know that not getting those makes me feel much more fatigued.

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I had those death like feelings during withdrawal. Realize it is temporary and try to go on. Resting time is good. One needs it during this time. Eventually I would have some really low lows (dying?) followed by the highest high I remembered in years. When I finally started to get better, I felt I should be better every day, but there were twists and turns and bumps. I felt hopeless every time I bottomed out. You may be at a bottom point, but it may get better soon.

After 30+ years of celiac symptoms, I didn't die. Instead I am now living with a clear mind and energy. Keep on walking...

Get Well, and here are some flowers ***

D

Do you remember how long this went on before the good days started consistently outnumbering the bad?

When I first started the gluten-free diet I was taking sub-lingual B12 and sub-lingual biotin, plus a multi-vitamin. After a few weeks I felt better than I had since I was a kid. I had so much energy I was driving my friends crazy. THEN the corn intolerance hit and I could no linger take my vitamins because they all had either gluten or soy or corn.

After a month or two I felt like I was dying. My energy level dropped, I could cry (and did) several times a day over nothing, and I actually felt weak. I modified my diet making sure to eat a sweet potato every day (they are the most nutritious vegetable) and broccoli, etc. I upped the amount of meat I ate. I started feeling somewhat better but still have never regained the energy I had for a while there.My memory is shot too. As a matter of fact, I told a friend just this morning that it's time I risked trying corn starch again (I got it back for a while until a glutening knocked me off my feet). I can live without gluten-free breads and stuff, but I need some B12. I'm going to stop by the health food store tonight and get some. I'll let you all know what happens.

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Do you remember how long this went on before the good days started consistently outnumbering the bad?

After 2-3 months, I had some better days, but then I cut out all grains and went into a new withdrawal for another 2-3 months.. I did not really have a clear mind until I started rotational diet and cut out foods which I was intolerant last November. Now I am 1 1/2 years gluten free and have done many things to regain health. Nearly all of the days are being good now.

There are so many factors involved in each person's struggle. Rotational diet and digestive enzymes were my final frontier(hopefully!), but if you are have functioning villi, or have no intolerances you wouldn't need to do them. I think nutrient tests were helpful to find out what I needed. I am on a comprehensive nutrient program as recommended by my health practitioner.

I guess you're at that stage when you are ready to do anything to feel better? It takes time and discernment, possibly some changes. I hope you have friends pulling for you. It is nice to have someone to carry you along. Do what you know to do-and keep doing it.

D

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It sounds like the withdrawal I went through too. I was incredibly moody and tired, I was resting at the top of the stairs.... And the headache! That migraine lasted close to week. It hurt to blink. Yuck!

Withdrawal lasted about two to three weeks, I think it was closer to two. After that I felt a fair but better for a couple of months until my body went through some sort of autoimmune attack with fatigue, rash and joint pain which lasted a few months. I think my body was going through so many changes (gluten-free diet and starting thyroid treatment) that it ...over reacted quite badly.

Like the others said, you need to give it time for your body to adjust and heal. Adalaide said, it takes a while to hit the superman stage, just remember that some of us need to go through the road kill stage first.

Hang in there.

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I haven't been tested for anything but today I can confirm that I am either celiac or gluten intolerant as I was glutened, yup I was brought to a restaurant and you know what they put on that food, gluten gluten and more gluten, felt bad for about 3 hours. I.m ok now. I hope this doesn't make it so much worse in the short term, i hear people feeling bad for 10 days from simple cross contamination.

I rested for 11hours last night probably slept a good 9 total and today when I woke up I was so extremely exhausted, the word is weak to explain how drained I was, I went again and took a multi vitamin pill, been over a month since I had one has last time I took one I wanted to vomit really bad. I've also been trying regular peanut butter again and it seems to give me gaz too but nothing as bad as the natural one. Guess that's one more think to cut off my diet. I only felt better when I had my coffee cup, which from there I was about to survive one more day.

It feels like all I should eat is veggies/fruits and meat for months as people mention a lot of dairy and corn intolerance. Not quite sure how one expect to have a varied diet with so limited choice and meat being very expensive while none of those thing really full me up.

Tomorrow I am going to the grocery store and I will buy about the same thing as usual but with more fruits, I get so hungry 24/7 I am literally always hungry yet I can't eat as much in one session as I once did because I'll feel bloated. It gets to the point where I'll eat before sleeping and even before my sleep cycle is over I'll be starving,

One more concern I been having is the daily intake of vitamin A, as too much vitamin A can cause all short of low energy and pain syndrome and being that there is a lot of those in sweet potatoes I'm wondering if I shouldn't eat too much.

-To answer tarnalberry, every single day I fight to lower my stress but it's hard when the system expect you to pay your bills and you gotta count every single pennies after each transaction because that is how short you get on money with a part time job all while you are so energy drained that all you can do is sleep plus having you ass hurt so bad that you can no longer enjoy relaxing on a chair while having to look for a job before you get kicked in the street. Yup life has its way of being a pain. I would dang love to know why I get numb arms, I cannot lay on my stomach or they get numb, in fact they get numb in just about any position and I had a sinus surgery about 7 years ago I'm thinking something changed over time.

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I haven't been tested for anything but today I can confirm that I am either celiac or gluten intolerant as I was glutened, yup I was brought to a restaurant and you know what they put on that food, gluten gluten and more gluten, felt bad for about 3 hours. I.m ok now. I hope this doesn't make it so much worse in the short term, i hear people feeling bad for 10 days from simple cross contamination.

I rested for 11hours last night probably slept a good 9 total and today when I woke up I was so extremely exhausted, the word is weak to explain how drained I was, I went again and took a multi vitamin pill, been over a month since I had one has last time I took one I wanted to vomit really bad. I've also been trying regular peanut butter again and it seems to give me gaz too but nothing as bad as the natural one. Guess that's one more think to cut off my diet. I only felt better when I had my coffee cup, which from there I was about to survive one more day.

It feels like all I should eat is veggies/fruits and meat for months as people mention a lot of dairy and corn intolerance. Not quite sure how one expect to have a varied diet with so limited choice and meat being very expensive while none of those thing really full me up.

Tomorrow I am going to the grocery store and I will buy about the same thing as usual but with more fruits, I get so hungry 24/7 I am literally always hungry yet I can't eat as much in one session as I once did because I'll feel bloated. It gets to the point where I'll eat before sleeping and even before my sleep cycle is over I'll be starving,

One more concern I been having is the daily intake of vitamin A, as too much vitamin A can cause all short of low energy and pain syndrome and being that there is a lot of those in sweet potatoes I'm wondering if I shouldn't eat too much.

-To answer tarnalberry, every single day I fight to lower my stress but it's hard when the system expect you to pay your bills and you gotta count every single pennies after each transaction because that is how short you get on money with a part time job all while you are so energy drained that all you can do is sleep plus having you ass hurt so bad that you can no longer enjoy relaxing on a chair while having to look for a job before you get kicked in the street. Yup life has its way of being a pain. I would dang love to know why I get numb arms, I cannot lay on my stomach or they get numb, in fact they get numb in just about any position and I had a sinus surgery about 7 years ago I'm thinking something changed over time.

I'm nearly 3 years gluten-free, I can tell you the first year was the hardest. It took 6 months to figure out I was intolerant to dairy, egg and soy. Now I can have all three again. I finally starting feeling alive again. It was and still is amazing. This past year has been harder for me but I think that is nothing to do with anything you might be going through (hormone issues). I may have a little bit of an advantage on some of the folks on the board as I literally believed I was going to die soon before I was told I might have Celiac disease. I'd never heard of it but when I was told it could be treated with diet I was over joyed! I thought maybe I had a brain tumor or something. Anyway when I first started my Doctor gave me Prozac and that I suspect made my withdraw milder. Don't know if that would help you or if you'd even want to try it.

And like everyone else said you need more fruits and veggies but I'm the little chick with the horns telling you that. (I really need to work on eating my fruits and veggies)

I think you need to take a little time to learn about DH and celiac disease. Celiac and DH are technically autoimmune disorders. This is about DH:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
Learning about celiac disease (overview):
https://celiac.org/celiac-disease/understanding-celiac-disease-2/what-is-celiac-disease/
Testing for celiac disease via blood test:
https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/
I think the full panel is around $400 and the basic budget screening which is pretty darn good (TTG IgA) is under $100.
If you are paying for your medical care (even under insurance) you have the RIGHT to copies of everything. So, when your doctor orders a lab test, ask for a copy of the order, so YOU know what he is ordering. Then you can google to see if he/she is ordering the right things. Get a copy of the results. Get a copy of the costs/receipt if you are paying out of pocket. Put your requests in writing.
I think some labs and doctors use the term for gluten allergy incorrectly. 1. There is a wheat allergy (IgE) that is like a peanut allergy which can cause anaphylactic reactions (throat swelling, breathing issues, drop in blood pressure). There are some blood tests that are about 50% accurate, along with skin scratch tests (also not super accurate. 2. There is celiac disease (autoimmune that when exposed to gluten attacks the intestinal track, skin or brain) triggered by gluten (I gave you the blood tests: TTG, DGP EMA). 3) Non-celiac Gluten sensitivity or Intolerance which is like celiac in terms of symptoms, but no antibodies are generated and intestinal damage does not occur. This diagnosis is reached when you have failed the first two as there are n tests for it.
Read through the DH section of this forum for symptoms and tips.
I hope this helps.
Finally, if you really suspect DH, you can always go gluten free. Keep in mind that you need to be strict and you need to adhere to the diet for at least six months to a year.

I mean I might get a prescription refill, or a new vitamin pill for example, and take it for awhile, with absolutely no symptoms. As we know, no symptoms does not mean no damage being done. I will feel fine for weeks, but then I start feeling awful, like a bad flu coming on. I never did get the intestinal symptoms others get.
This for me is the hardest part of having Celiac's, figuring out what did it. Last month I ended up with pneumonia because I thought the achey symptoms I was having was from gluten, maybe from cross contamination even though my kitchen is off limits to gluten, maybe from some new prescription, maybe from some new tea I was trying, maybe from new vitamins (marked gluten free but not certified, those have gotten me before), so I stopped taking all of that but didn't feel better and kept getting worse. It took me awhile to figure out I actually had a flu and by that time it went to my lungs and had to go to urgent care.

I think, at least from my personal experience, that these tests are accurate if you were diagnosed including blood work that was positive. All of the tests on my panel were positive by large numbers at diagnosis and over the next year, they went to very low normal for the ranges given. My GI symptoms were gone by then and the lingering neuro ones took longer to heal but they did. I would assume in a highly symptomatic Celiac, that resolution of symptoms, normalization of the blood work and weight gain would indicate healing. Whether I am 100% healed or not doesn't matter as my health is far better today than it was in my youth. I have not developed any more AI diseases than the 4 I already have and I call that a big win.
I think doctors do not take into account enough symptom resolution, weight gain for the skinny Celiac's or weight loss for those on the opposite end of the spectrum, as important markers for healing. I am not even sure if it is totally necessary for a person to heal 100% as there is overlap in the small intestine and nutrients are absorbed not in just one place, making it a brilliant design, when you think of it. If your health has improved dramatically on the gluten-free diet, along with the other things mentioned, then consider yourself healed well enough that you've regained your health back. Repeat endoscopy's are really for those still having problems.

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